When Michael Frolichstein received a Celiac Disease diagnosis six years ago at the age of 40, he knew he would someday share his story and the story of others who had suffered, as he had, for years as an undiagnosed Celiac.

A filmmaker by trade, Mr. Frolichstein tinkered with the idea of making a documentary on the topic, but it wasn’t until his three-year-old daughter was also diagnosed that his passion to get the word out on this often misunderstood and under-diagnosed disease felt more urgent.

“I had health issues most of my life, but the last ten years leading up to my diagnosis were terrible,” he said.

As an adolescent, Mr. Frolichstein had stomach problems, was hyperactive and had a difficult time concentrating in school. He also suffered a few epileptic seizures.

“Behaviorally, I was all over the place. My doctors told me I had ‘nervous stomach’ and I would eventually grow out of it.”

Mr. Frolichstein did not grow out of it. In fact, his symptoms worsened as he aged and by the time he turned 30 he described feeling like a “caged animal” trapped in a body that felt exhausted and sick most of the time.

“I would wake up in the morning in a complete fog. It would take me hours before I could feel alert enough to go to work. I didn’t know what was wrong with me.”

Neither did his doctors, often prescribing him anti-depressants and sending him on his way.

What is Celiac Disease?
Celiac Disease is an autoimmune disorder. The purpose of the immune system is to protect the body from invaders. When a person with Celiac Disease ingests even the smallest amount of gluten, a protein found in some grains such as wheat, barley and rye, the immune system sees the gluten as an invader and attacks it.

This consistent bombardment causes damage to the wall of the small intestine, which in turn, deprives the body of vital nutrients. When the brain, bones and other organs are deprived of nutrients and left untreated, a broad range of serious health problems can arise.

Celiac Disease is not to be mistaken for gluten intolerance, which is not an autoimmune disorder but rather a sensitivity to gluten and can cause different but often devastating symptoms as well.

Today it is estimated that 1 in 133 people in the United States have Celiac Disease. It is also estimated that 83% of people with Celiac Disease are misdiagnosed or not diagnosed.

Statistics like these leave people like Mr. Frolichstein utterly dumbfounded, particularly because the disease can be detected with a simple and inexpensive blood test. If the blood test comes back positive, it is typically followed by an intestinal endoscopy to confirm diagnosis.